Wednesday, February 10, 2010

Jonah's EB Auction

I've mentioned Jonah once before here, and you've probably grown accustomed to seeing a button about him on the sidebar.

I found out about Jonah through a mutual friend of his mom's. He was born with a rare genetic disease called Epidermolysis Bullosa or EB. EB causes his skin to blister very easily, and it also affects his mucous membranes (so, for example, swallowing can be hard and/or painful when his esophagus flares up). Most of his body has to be wrapped up in bandages all the time, and his parents have to change his bandages once a day (more often when normal baby things like spitting up or a crazy diaper interfere!). EB is not pleasant for any of the people who have it, and many babies die within their first year of life from it.

Jonah will turn one on February 27. Hooray!!

To celebrate, while also helping raise money to research and spread awareness about the disease, some friends of Jonah's family are holding an online auction (hence the new button that's been up recently). From February 23-27, the auction site will have around a hundred items to bid on, and all the money goes to DEBRA, which is an organization devoted to researching and raising awareness about EB. The auction-sponsors aren't even collecting the money themselves--you pay it directly to DEBRA if you win an item.